Archive for the ‘augmentative communication’ Category

Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Anne Radmacher

After our terrible, horrible no good, very bad morning you might think that Niksdad and I decided to lay low and stay close to home this afternoon.  You’d be mistaken.  After a hearty lunch and some down time for Nik —and a healthy dollop of analysis and brainstorming by Niksdad and me— we decided to try our luck a second time.  After all, the festival is only one day a year and the orchard offers free peach ice cream cones—made from their own peaches— which is heavenly!  Even Nik adores it.

I am happy to report that the outing was a rousing success!  Nik managed to consume an entire cone by himself —along with a goodly portion of mine!  We even managed to get in some play time at a nearby park which we’ve recently discovered.  Nik was so happy all afternoon; he sang and clapped and raced around the park without a care —exactly as we had hoped it would be.  He even picked up a sweet little guardian angel!

I don’t think it’s an exaggeration to say that our afternoon was the antithesis to our morning. 

So what was different the second time around?  Nothing, really.  And everything.  I know, I know —that doesn’t make sense.  But, really, the things we did were so incredibly simple that I wasn’t even sure it would work.  We met Nik where he was.  To do that, we had to observe his behavior and listen to his cues.

Let me give you a little background which might help this make sense:

Nik is nonverbal but extremely intelligent.  He understands just about everything that is said to him, about him, around him.  He takes everything in.  He also has a very strict interpretation or understanding of certain constants.  One of those constants is that food is eaten while sitting in his booster chair at the table unless it is otherwise specified. e.g., “We’re going to Nanny and Granddaddy’s for dinner.” or “We’re going to a restaurant for lunch.”  (Snacks are a different category; he’s ok with eating them in the car, at the park, play group, etc.)

Nik is also usually very good about adapting as long as he understands the sequence in which he can expect things to occur.  Nik knows ice cream is food.  He doesn’t know that “going to get ice cream” means going somewhere —let alone somewhere new —in the car.  So, to Nik, “ice cream first, then park” would mean “We’re going to sit at the table and eat ice cream and then go to the park.”

Nik is also amazingly observant of his physical surroundings.  He can tell where we’re going based on the turns I take or the scenery along the route.  If I tell him that we’re going somewhere different —and I may have to repeat it many times to reinforce the message as I drive— Nik is, generally, ok with it.  Today’s destination —the orchard for the ice cream and petting zoo —took us right past the turn for the park.

Can you see where this is going?

Right. So here’s our happy-go-lucky boy —already wound tighter than a top from the shoe incident— thinking he’s going to sit and eat ice cream and then go to the park.  By the time we got to the orchard, not only had we not eaten ice cream but we’d driven past the park!  Poor Nik  was experiencing such tremendous cognitive dissonance that he simply could not function.  I’m not using hyperbole for effect, either.  By the time we returned home this morning, though he was happy and clapping when we pulled in the driveway, Nik was completely motionless and silent when we opened the car door.  It was as if he simply checked out for a moment to re-calibrate.

This afternoon, armed with those realizations, and the knowledge that Nik doesn’t know what the new place —the orchard— is, we realized that we had to give him only one part of the sequence at a time.  Otherwise, we risked the likelihood that Nik would fixate on “going to the park” and block out the rest because he couldn’t visualize it.  We also decided to try something that I’ve been meaning to try for a while —a rudimentary picture schedule to help Nik know where we are going in the car and why we are not going the way he expects us to go.  (Side note: Nik doesn’t seem to have this trouble with changing activities at home or at therapy; it’s only when we are driving places that he gets so rigidly attached to his expectations.)

I printed out two pictures to take with us.  We gave Nik the first one —a full size picture of an ice cream cone— before we got in the car and explained to him that we were going to “a farm” to get ice cream.  Oddly enough, though I don’t think we’ve ever taken him to a farm, Nik seemed to understand that concept.   Maybe it was simply because I named something that he understands as an actual place or, at the very least, a place that is not home?  I really don’t know.

As we drove along the exact same route we took this morning, I sang silly songs about eating ice cream and going to the farm for yummy ice cream.  Nik even got into the spirit when I asked him to show me how he eats an ice cream cone by, well, eating the ice cream cone picture!

eating pic of ice cream

Nik never once whined nor got upset the entire drive.  As soon as we arrived, he let Niksdad put him up on his shoulders and we made a beeline for the ice cream.  Nik’s reaction was all the proof we needed that we had done the right thing:

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After Nik downed an entire cone —and attempted to eat a few twigs, too —we asked if he wanted to go to the park.  He wasn’t quite clear about that so I asked if he was ready to go in the car.  That got a clear affirmative so we went and sat in the car.  Once we were in the car, Niksdad gave him the second picture —a picture of a playground similar to that at the park —and asked if he wanted to go there.  The light bulb went on and our little dude was on board.

The rest, as they say, is history.

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It’s been a very slow process for me to get around to reviewing the newest Baby Signing Time offerings, Volume 3: A New Day and Volume 4: Let’s Be Friends. It’s not because I didn’t want to; it’s because every time I put the DVD into the player and started to watch it with Nik he would get very upset. Nik, as many of my regular readers know, is a huge fan of Signing Time. He is not, however, a huge fan of anything which remotely smacks of change from the expected routine. It’s one of his non-negotiable autistic traits and we just sort of roll with it as best we can. Some days it’s smooth sailing and others, well…(shrugs shoulders).

As it was Nik had a difficult transition to the “new” Signing Time opening and the “new” format with Hopkins when we bought the first set of videos. We’d been checking them out of our local library; that was a feat since our state library system only has one copy of four different videos in their collection. Yes, that’s right; one copy of each and there’s a very long waiting list.

So, I finally was able to make the time to sit at my computer and watch Baby Signing Time all by myself. Okay, right there is a ringing endorsement, folks! The videos are so good that I was perfectly willing to watch them alone. Of course, I also enjoy watching some of the Disney Channel offerings so maybe that’s not such a ringing endorsement after all. You decide.

I must disclose up front that I watched these videos with a definite bias. I tend to filter many things through the lens of my son’s various learning challenges which include difficulty with fine motor control and difficulty processing a lot of busy or complex visual information. He is very much an auditory and tactile learner, preferring to learn by doing. His first attempts at communication were actually humming the tunes of very specific songs I used to sing to him to do things such as changing his diaper or brushing his teeth. The musical element of the Signing Time videos is sometimes critical to Nik’s ability to learn and recall the signs he has learned. If I hum a snippet of the song relating to the sign he wants to recall he is able to do so.

On the whole, I loved the Baby Signing Time videos. They are very different in tone and feel from the Signing Time series with which we are now so familiar in our house. I will say up front that I won’t buy them for use with my son simply because the transition would too traumatic at this point. However, if I were just starting out with signing and Nik were a bit younger? I’d own them all.

Overall, I think the videos are well structured and geared toward the pre-preschool age group. The overall look of the Baby Signing Time videos is simpler, less active or visually cluttered and the emphasis is on building concepts as well as vocabulary. In the songs, I think Rachel’s signing is more focused on the specific signs being taught. My experience of the songs in the Signing Time series is that they are richer in signing additional vocabulary; they can be a nice way to pick up some new signs as you go. In Baby Signing Time, the simplicity serves a good purpose in keeping it uncluttered or visually uncomplicated for small children who have shorter attention spans and who may not be able to follow along quite as quickly as an older child.

The repetitive vocalization and signing, combined with both real life and cartoon representations, and layered with music, can reach a multitude of learning styles —auditory (both spoken and sung), tactile, visual (both literal and representational images). The introduction of the cartoons interspersed with real life examples can actually help children make the cognitive leap to symbolic representation. This is a very critical step for many non-verbal children as so many early communication systems —especially in schools —rely on some form of picture exchange system.

In Volume 3: A New Day, I think some of the words and concepts may not be as meaningful or motivational to small children. That said it does give parents a way of introducing and layering language to describe a child’s environment. I don’t know that I would expect a small child to tell me about the sun or rain —I know many preschoolers who struggle with some of those concepts; my son can no more tell me what the weather is like outside but he can tell me he wants his book. None the less, I suppose it’s sort of like advanced vocabulary words; nice to aspire to and enough of a stretch to keep advanced learners interested.

I really like how Rachel plays dress up in the different segments. At first, I thought it a bit hokey, but after thinking about it I can see that for many children it can encourage creative play. Also, I think many young children will think it’s silly or funny and that, too, can be a huge reinforcer. Let’s face it; some people remember jokes better than straight facts! I’m not sure which I liked best —Rachel in her giant sunglasses kicking back in the Adirondack chair or Rachel with the bug antennae and being all squirmy and squiggly! It’s very cute.

I found the content of Volume 4: Let’s Be Friends more applicable on a day to day basis at a younger age. I think there were more of the words most commonly used in a daily routine —names of some common foods, how to start to express yourself, opposites, and feelings. I almost wish the two volumes had been reversed. Many children are learning about feelings, foods, and toys before they are going out into the world and learning (or expressing things) about the weather. Really, it’s a minor complaint in the scheme of things as I think all of the material presented in the videos is wonderful and engaging.

Another complaint —and it may have simply slipped past me, though I tend to notice these things more since Nik was born —is that it seemed to me there was significantly less use of overtly disabled children in the Baby Signing Time videos than in the Signing Time videos. I don’t know if this was an intentional choice or if it’s simply the way they were edited. I saw lots of children with Down syndrome but I did not see any children with things like braces or wheelchairs or even any obvious motor impairment. I think it’s important to expose young children —and their parents —to children with disabilities as just part of the normal course of daily living. I know that this is equally important to the folks at Two Little Hands Productions so I was a bit surprised at the omission.

Finally, I do have to say that I have a real love-hate relationship with some of the songs Rachel uses at the end of the videos. I love them because they are wonderful songs rich with meaning. I hate them because they are loaded with meaning for me as a parent of a child with multiple special needs. I cannot listen to “Show Me a Sign” without crying a river. The words remind me of all the things my child is not yet able to express in spite of his obvious intellect and desire to do so. Also, I think knowing a bit of the history behind songs such as “Tiny Hands” makes them more poignant.

The third offering on the DVD I was sent, Elizabeth Barrett Can Read is an inspiring account of a little girl with remarkable communication skills who began reading at the age of thirteen months. It should be noted that her mother, Katy Barrett, is a speech pathologist and that she was not actively teaching Elizabeth to read. Katy acknowledges that communication comes easily for Elizabeth; she states “Obviously, she’s got some special abilities to be able to do this.” Katy also says she believes the visual nature of signing helped Elizabeth connect the symbols (signs) to the letters she saw on screen and to the meaning of the words. I can’t help but wonder, though, if Elizabeth is possibly hyperlexic. Clearly, Elizabeth is a very strong visual learner with an ability to recognize letters and patterns of words and language. While I think Elizabeth Barrett is absolutely not your typical young learner, I think there can be little doubt as to the power of layering language in so many ways. As Katy says, there are so many children who don’t have communication tools and sign language can be a bridge for them.

The nice thing is that it’s never too late to start.

See clips from from the newest Baby Signing Time videos here:

Volume 3: A New Day

Volume 4: Let’s Be Friends

Visit Signing Time to find out how you can get your own Signing Time or Baby Signing Time products today.

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It’s amazing how quickly things can turn around here; One day we’re up, the next we’re down and then we bounce right back up again! It seems that my recent weeks-long bout of sluggish energy and really poor concentration— to the point that I have felt the need to nap after working out and couldn’t remember what I’d said or done mere hours before— and a few other symptoms, including the muscle cramps and migraines I had at the end of last week, may have been the result of a fairly significant potassium deficiency. With my efforts to lose weight (pretty much at a standstill right now) and my working out quite vigorously, it seems I don’t consume enough potassium in the normal course of my day to sustain the amount I actually sweat out of my body.

Good thing my husband, the LPN, is such a smart guy! He caught it and bought some potassium supplements yesterday. After taking a few doses throughout the course of the day, most of my symptoms cleared up by mid afternoon. By this morning I felt more “normal” than I have felt in a few weeks! I even had a great workout and felt completely revitalized afterward. Wow. Now I know the signs to watch out for —and what to do, too!


As I’ve mentioned a time or two, Nik has become enamored of Signing Time videos. The progress he has made in the short time we’ve been watching them is, to me, nothing short of amazing. (Don’t believe me? See here, here, or here!) Lately, Nik has been making such clear efforts to communicate —including asking for help— and having fewer and fewer instances of extreme frustration which lead to potentially self-injurious behaviors. Of course, I’ve learned many more signs than Nik but he watches and takes it all in —even if he cannot replicate the signs he sees. We’re learning how to adapt and helping Nik find ways to make choices and needs or wants known; whenever possible, I ask him to “use your words” or “show me your words” as I model them for him.

We’ve progressed to auditory and visual scanning in many cases, too! When I know what Nik wants, I will play a game with him and present— with both words and signs—a variety of choices including the one I know he wants. When I get to the one he wants, Nik will often sign “please.” Then I will say “Oh, you want Mommy to open the box?” for example. “Can you use your words? Can you show Mommy how you say open?” All the while I am showing him the sign so he can imitate me. When he has shown me the sign for what he wants, I ask Nik to use his “nice words.” [One of the ST videos has a great song about Please, Share, Your Turn, My Turn, and Thank You.] He almost always signs “please” or “thank you!”

Much to my surprise and delight, Nik has recently begun imitating the intonation of certain words. When I am expecting to see him signing something, lately Nik has instead been making the tonal sounds of the word as he simultaneously signs “please.” I’m still getting used to the idea that I have to listen more closely to the specific sounds he is making and put them in the right context.

The layering of language in the videos is so effective; the music and printed words, the singing, the video modeling by both adults and children —of all walks of life and abilities, is so powerful that I often find Nik gesticulating wildly in an effort to try to communicate! He knows he is “signing” in his own way. I must confess; it’s adorable to see though it’s not always easy to interpret!

I don’t think it’s an exaggeration to say that these videos have changed our lives significantly. I’ve also not made any mystery of my desire to own the series but they are not cheap!


Back in May, I filled in at the last minute for a parent-presenter at a conference which focused on how to build successful relationships with and work with practitioners —primarily educators, therapists, and medical professionals— to advocate for causes relating to our children with special needs. It was an honor to have been asked and I wasn’t sure what I had to contribute; the professional I was partnered with had things well in hand. But, I willingly stepped up and served where I was needed. It was a tremendously enlightening and fulfilling day; I was surprised to find out— after the fact— that I was to receive a stipend! My past experience with stipends for this sort of work has been that it’s really a small amount which might cover the cots of gas. Imagine my surprise last week when I received a fairly sizable check in the mail!

I’m not talking about a buy-a-new-wardrobe kind of check but something in the neighborhood of a buy-a couple-of-nice-outfits check.

I finally decided to buy this; it arrived today! I threw in a copy of this, too; it makes me weepy and emotional sometimes!

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Too tired for fluid and coherent prose tonight. Things are good. Nik’s recent blood tests all came back “normal” and his CT scan is on June 9th. We’ve been weaning him from one of his seizure meds and do see a bit of a decrease in the painful episodes. We’re starting to wonder if the ear stuff (flicking, swelling, shaking his head, disturbed equilibrium) is completely unrelated to what seemed to be cluster headaches. They both started up around the same time (well over a year and half ago) but the headache-like activity increased shortly after we added this particular med —which, ironically, is also used for treating severe headaches, too!

Interesting to note, too, is that Nik’s need for a midday nap also seems to have diminished as we’ve reduced his morning dose of this med. In fact, for nearly a week now, we’ve cut out his afternoon nap and Nik has fallen asleep pretty quickly each night and made it through most nights without so much as a peep! He’s been sleeping roughly eleven hours straight!

We’ve also noticed another uptick in Nik’s communication skills/language acquisition. Just this weekend, he started to use two signs together when requesting something —“open please” or “more please” being the most common. He’s still crying, screaming, or head-banging to get our attention if we are not within his line of sight; once he knows we can see him, Nik reverts to trying to sign. Not perfect but a marked improvement.

Speaking of improvement…Nik’s communication devices have finally arrived! It felt like Christmas when I picked them up today.

And, finally —well, not really but I’ll save the rest of it for another post —Nik took his first voluntary bite of a pretzel stick today! It scared him a bit and he wouldn’t try it again but he did let Miss M continue to tap it against his back teeth. Progress.

Well, I’ve run out of mental steam —Nik had me up at o’dark-hundred hours this morning to change a stinky diaper and pajamas. The little fink went back to sleep right after I left for the gym. Ah well, it builds character, right?

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If music be the food of love, play on; give me excess of
it, that, surfeiting, the appetite may sicken and so die.

~William Shakespeare~

While he may lack the prodigiousness of the Bard, Nikolas seems to be experiencing an explosion of communication lately. Not just in the generic cooing and babbling which he often does, or even the “singing” of certain songs/tunes —though he has been singing more in context to indicate an activity or desire, come to think of it.

No, Nik really seems to be catching on to this whole communication gig. We’re having some mixed successes with the actual AAC devices; Nik is making good progress with sequencing but the whole bit about conscious choice-making with the push of a button? Sporadic at best. I’ve been working with Nik’s speech therapist, Miss M, on finding ways to develop this skill. We are both thinking waaay outside the box here. Nik really is not cued in to visual symbols yet but is keen on music. We’re working on some ideas to incorporate a snippet of music —like a line of a song from a video he likes— only spoken, not sung, and coupled with a visual representation so he has to hit the button if he wants to actually hear the music.

So, when you add in the powerful motivator of music, with Nik’s new found crush on Rachel, and his intense desire to eat… well, you get something like this:

(For clarity: the sign for apple is made by rubbing your knuckle in a small motion in the apple of your cheek. Children who are just learning to sign —or those with fine motor impairments —often use approximations rather than precisely mimicking the sign.)

Now, the video is obviously set up but I did so in response to Nik actively requesting a piece of apple from me at dinner time. TWICE and without prompting!

In addition to the spontaneous signing —in the correct context, too, as he signed “eat” and then “apple” in succession —Nik has also begun mimicking the intonation of certain words or phrases that he hears me say or is learning from the Signing Time videos. Tonight, after I gave him the apple wedge and he started slurping away like there was no tomorrow, I said “Nik, can you say Thank you!” as I made the sign, too. He thumped his chest with his palm (apparently his way of saying “thank you” as well as “yes”) and said “uhhhh-uh” in perfect intonation.

The words may not have been there, but I swear I heard “I love you, Mama” in that simple guttural utterance. Nik beamed at me; I laughed —then wiped away a tear.

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I’ve been so busy keeping up with Nik lately that I haven’t had a chance to share some quick updates. Sorry! Here they are —in no particular order:

The issue with Nik’s AugCom devices seems to be nearly resolved. I don’t know if the larger issue is worked out between the managed care organization and the vendors; frankly, I don’t much care as long as we get what Nik needs. I can’t fight their battles for them, too! The short version of the story is that the case manager managed to get someone at DynaVox to agree to order the AbleNet devices for us. I don’t know when they will actually be ordered and delivered; in the meantime, though, the good folks at DATI have been kind enough to let us continue to renew the equipment loan until someone else needs the equipment or Nik’s own devices are delivered to us.

Nik’s wild EEG experience was either really useful or not at all; we haven’t decided. The neurologist told us last week that the results showed no evidence of any seizure activity during the time it was recording. That means one of a few things is possible; either Nik is no longer having seizures (unlikely at this point), the seizures are under good control with the meds he is taking, or his seizures are now less frequent and there simply weren’t any in the twenty-four hour period captured by the test.

The good news though is that the mysterious pain episodes are not seizure related. We sort of knew that intuitively but it was nice to have it confirmed. That means we are now moving on to the next area of investigation —Nik’s meds.

This past week we did a short trial of increasing one med in preparation for decreasing another; it was a miserable failure (which is one reason why I’ve been quiet most of the week and unable to do things like finish reading this book). For the entire week Nik was like someone else’s child; his personality was more than slightly manic, his sleep was greatly disrupted (and so, too, was mine), and his coping skills deeply diminished —to the point that even things which used to make him squeal with delight would elicit that reaction and then immediately plummet into a meltdown complete with head banging and thrashing. The doctor had us go back to the “normal” med schedule and dosing after six days of this.

I am ecstatic to report that my happy little boy is back!

We are still not entirely convinced that Nik’s immune system and/or ears aren’t at the root of the mysterious episodic pain. His lymph nodes both in front of and behind the right ear are constantly swollen yet he has no obvious infection. He does get sick more than I think is normal and it always seems to involve his ears and his gut. We’re making another appointment with the pediatrician to discuss a CT scan of Nik’s right mastoid to rule out the possibility of chronic mastoiditis, and to get a referral to another immunologist for a second opinion and testing.

Nik’s overall progress continues to be rapid and positive. He’s still small for his age —only the third percentile for height and twenty-fifth percentile for weight (he’s solid muscle!)—but he is showing consistent and steady growth. Not bad for the kid who started out at nineteen ounces, eh? He’s ambling around in his new orthotics with a confidence and balance that belies his shaky start and extremely delayed gross motor skills; his gait is still uneven and somewhat jerky but it doesn’t keep Nik from getting places in a hurry!. Nik’s also tolerating a broader range of textures lately —showing a willingness even to dip his fingers into yogurt or mashed fruit and to pull a favorite toy out of a box of rice or pile of sand. All of those textures sent him into absolute hysterics just a few short months ago.

On the feeding front, it’s still slow going but with small, steady progress. Nik is taking more initiative with the chewy tube and tolerating it for more bites between food or as a preparation for eating. He’s eating a little bit of food by mouth each day —not enough to substitute for a tube feeding but enough to measure in terms of his overall intake. Nik’s constant favorite is goldfish crackers but he will try some of absolutely everything we offer him; he’s not shy about telling us which foods he doesn’t care for though there aren’t too many we’ve found yet; with Nik, it’s more about the consistency or texture.
Nik’s overall communication skills have expanded greatly in a short time. He is learning, I think, about intent and effective ways to get my attention. Lately I find, more often than not, that Nik is willing to slow down that fraction of a second it might take to show me what he wants; he’s also doing so well at following instructions now. It helps, I know, if I use consistent language with him and give him cues and clues as to what is coming and what is expected of him. The times I forget to cue him as to what’s next are the times I regret the oversight.

I know Niksdad must think I am trying to control his every little communication with Nik but he is slowly coming to understand that Nik needs that specificity and structure to help him keep it together. Something as simple as telling him the sequence of “clean pants and pajamas FIRST, THEN toys” can make all the difference between his joyful cooperation or wrestling him to the floor to change a diaper.

From a social and emotional standpoint, Nik has become very affectionate; even the neurologist took note of it last week. Nik knows and understands the value of hugs and kisses and uses them liberally —and not just for effect either! I’m always floored when I’ve been out for a while and Nik drops whatever he is doing and comes to greet me with a big kiss. And I still get choked up whenever I watch the way Nik responds every time his Daddy walks in the room.

Imagine a golden retriever puppy shivering with delight when it sees its beloved master and you’ll get some small idea; it is definitely a visceral response for Nik! When the two of them are playing together or merely sitting side by side on the sofa and Nik leans his little face into his Daddy’s —his hands look tiny as they rest against his father’s cheeks. Sometimes I wonder if he remembers the bond he first formed with his Daddy immediately after birth. He clung to Niksdad’s fingertip immediately after the nurses cleaned him up and the doctor inserted the breathing tube into his miniscule throat and lungs. They’ve been nearly inseparable ever since.

So, in all —in spite of some bumps and turbulence along the way— I’d say things are pretty good right now. And I’m not even afraid of tempting the Fatesmuch.

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Can someone please explain to me how it is that insurance case managers think they know diddly squat about things like augmentative/alternative communication (AAC or AugComm) devices? Seriously. Now, I’m not talking about the rare one who may actually BE a user of AAC his/herself, or who may have a background in speech and language pathology, or who may, possibly, be a nurse who has worked with individuals who use AAC. No, I’m talking about your run-of-the-mill case manager.

But I’ll get back to her shortly…

When Nik had his AAC evaluation in January, we —the team, which consisted of an AAC specialist who’s been doing this for roughly fifteen or more years, an occupational therapist, Nik’s speech therapist, and me —agreed upon certain points of information and technology; the first, and foremost, being that Nik is still very much in the “pre-emerging” communication stage. He does not yet have a consistent method of communicating his wants and needs; he relies on random use of grunts, claps, joint referencing, and dragging a person toward whatever it is he wants. In some cases, Nik will resort to extreme behavior such as crying, thrashing, hitting his head on the floor —but only in what he might consider dire circumstances. Nik, being the independent spirit that he is, is pretty self-sufficient; if no one is around to get what he wants he either finds an alternate means of getting it himself or he simply changes his mind and moves on to something else.

In some ways Nik’s self-sufficiency is a good thing; in other ways, it works to his detriment. Where everyone —Niksdad and I included —sees it as a wonderful thing that our son is so easy going and happily entertains himself, it has actually kept us from recognizing that Nik doesn’t understand how to communicate. He knows that he wants to communicate and he tries; but his scatter shot method is not terribly effective. As long as someone is constantly with him we can interpret his body language or eye gazes. But when he is left to his own devices, Nik cannot effectively communicate. That is, it goes without saying, something that is vital to get along in the world outside our tiny little home.

Out of the AAC evaluation, we determined that Nik needs to be taught intentional communication; he needs to understand that there is a dance, a give and take which he can initiate and elicit responses which can give him a tremendous amount of power and autonomy. The question Niksdad and I —and even Miss M, his wonderful speech therapist —didn’t know how to answer was How? How do we teach Nik to communicate besides simply modeling it for him? How do we take our highly intelligent and resourceful child and open up a whole new world to him in a way that makes sense and works for him?

While he was in school, Nik’s therapists and teachers diligently tried to use some variant of a picture exchange communication system (PECS) to help him express himself. The problem, or so everyone assumed, was Nik’s visual impairment; no one really knew what he could see with his right eye —we still don’t. When PECS was clearly not successful, they moved on to what I call enhanced PECS; the staff simply added some sort of tactile bits to the picture cards.

I remember the teacher giving me a moderately large wooden letter P which someone had painted with dots of green textured paint. The green was because that seemed to be the color Nik either preferred or could see best (we still don’t’ really know as Nik can now pretty much sort and identify colors of blocks at will), while the textured, bumpy paint was, ostensibly, to assist Nik in realizing that the wooden object in his hand meant something. He was supposed to carry this letter P with him when he was outside the classroom. There was a mate to this letter P on the wall outside the classroom door. In theory, Nik was supposed to be able to match the two letters and know that this was where he was supposed to go. Quite a tall order for a child who still does not know his letters and who, at the time, was unable to match shapes or colors.

Needless to say, the experiment was not a success and they simply gave up. I mean, really, it was somewhat akin to handing a two year old your car keys in the kitchen and expecting them to find their way out to the car, open it up and insert the key in the ignition. The child may know that they are holding keys, and they may have some vague understanding of what a car does (takes them “zoom-zoom” with Mommy or Daddy), but the concept of the relationship between the two is a long way off. The objects are simply that —objects. They are concrete; the child does not yet understand what they represent.

Once I understood that, I finally understood why PECS and the large, green, bumpy letter P didn’t work. Nik was not yet —is not quite yet— at a point where he understands symbols. To him, that large lumpy letter P wasn’t even the letter P. It was just a bumpy shiny thing that felt kind of neat in his mouth. The PECS cards? Perfectly sized, shiny things to tear off a chart and throw as he listened to the rrrriiippp of the Velcro.

This brings us back to the AAC evaluation and the question of how to bridge Nik’s specific communication gap.

I know I’ve said it before that the evaluator was incredible. Truly, this man had near-mystic insights into my child that I thought only Niksdad or I might have. He recognized Nik’s strong connection to music and sound and his need to control things through cause and effect type mechanisms —and then figured out how to put them to work in Nik’s favor. The perfect solution —I thought this at the time when it was still an abstract to me and I think it even more now that it has become a concrete reality —is a programmable switch which can be used to record multiple messages which Nik can then activate by a simple touch.

The actual device is called a Little Step by Step 75. I can set up multiple sequences of things such as getting dressed, getting ready to go out in the car, getting ready for bed, and many others. I simply introduce the button to Nik and have him press it once for the first step in the sequence. “Time to get ready for bed! Let’s get my pajamas.” Then we do that step. He touches the button again “Let’s take off my shoes and socks.” We do it. And so on. Or, I can program every other line of a song we might sing together so he can sing a line and then I sing a line. The idea is to teach him the give and take, the cause and effect of intent. He communicates “X” and then we actually do “X” and so on.

At first it was very haphazard; it took us a while to figure out some set routines and to teach Nik to wait; this isn’t a toy for him to play with. It’s not perfect by any stretch yet, but we are seeing some remarkable progress. Where Nik once wanted to press the button repeatedly and didn’t really pay attention to the words, he now waits and even looks from the button to us as if he knows he’s supposed to push the button before we do the next step in a sequence.

The second part of what we learned from the AAC evaluation is how to help Nik learn to make conscious choices. At the time, his only method of making choices was to simply grab at whichever of two objects we presented. Often, he would grab at the one closest to him and it wasn’t always the one he really wanted. So another device, similar to the Step by Step, was introduced.
The iTalk2 is a nifty two-button device which allows us to record a single message for each button. We can use it for teaching things like “Nik’s turn; Mommy’s turn” or for giving him choices between two toys or objects (shapes, colors, etc.). We record the message for each button and then reinforce it with a photograph of the toy, or the object being offered. Once the choices are made, we can switch the pictures and messages to reinforce the need for Nik to both look and listen as he presses the desired button.

For example, we offer Nik a choice between his “kitty cat piano” and “number train;” whichever button he presses we give him the corresponding object. If he rejects it, we swap the buttons and try again. It’s not yet consistent but Nik is definitely beginning to catch on to the whole choice concept.

Now, let me interject here that these are by no means long term solutions. They are a first step to help Nik make some cognitive connections about how to communicate. Once he’s doing fairly well with these devices we will go back for a follow-up session with the AAC evaluator and look at additional ways to use these devices and/or what is next.

The wonderful thing about the button devices is that they are simple —both in operation and visual presentation. This is critical right now where Nik cannot tolerate a lot of “visual clutter” and does not yet have strong visual scanning skills; when he gets too much visual input, Nik tunes all of it out. I sometimes think this is why Nik doesn’t have a lot of interest in books; they require too much effort for him to be able to discriminate what he sees on the pages. The simpler and cleaner the page, the better he tolerates it —even better if the pictures are actual photographs instead of illustrations.

Another great thing about these particular devices is that they aren’t terribly expensive; if you’ve had any experience with AAC then you can appreciate how expensive even the “entry level” technology can be for certain types of speech generating devices. These two devices cost in the low hundreds versus the thousands. And, because they are deemed medically necessary, state Medicaid regulations mandate that this expense be borne by Nik’s insurance. That’s a blessing for us right now as we are squeaking by while Niksdad is in nursing school and I am not able to work.

Thus, we come full circle to the case manager.

Because I knew there would be a significant processing time for all the paperwork to be completed by the pediatrician and then the authorizations and vendor quotes, etcetera, I arranged to borrow both devices from our state assistive technology group (DATI). Once I finally gathered together all the requisite forms and information, I contacted the vendor to arrange the quote and finalize purchase arrangements.

SCREEEECH…(the sound of the brakes being slammed on!) It seems this vendor, the only one in our region who handles these specific devices, will not do business with our managed care organization (MCO) because they have been burned in previous transactions. Swell.

So, I placed a call to our marginally helpful, marginally less supportive case manager, to find out how to proceed. Her response underwhelmed me.

In spite of the fact that she and I had already discussed these devices, and the fact that no other manufacturer has anything like them, she told me to call another manufacturer to see if they had something like it! It seems Nik’s MCO doesn’t actually have any AAC providers they work with; I’m guessing for the same reason we’ve encountered. They do have a moderate relationship with DynaVox —perhaps because it’s a large enough company to have a national sales team and can cut out the distributors? None of which matters since DynaVox doesn’t have a comparable device!

I contacted the evaluator for some assistance; he’s been doing this so long that he is the go to guy for all things AugComm in our area and knows all the manufacturers and their product lines. He told me that none of the providers he knows want to work with Nik’s MCO. So, here we are caught between a rock and a hard place. I’ve got devices that we are using and seeing actual progress with but I have to return them on April 14th. I’ve got a vendor that has the devices we need and an MCO that has, essentially, tossed the whole mess back into my lap to solve.

Oh, and the case manager took it upon herself to call DynaVox* and thinks she has found a device which would “work well for Nik” and she’s getting a quote and working on authorizations. Wow. And to think I wasted all that time going to the most highly respected specialist in the state for an evaluation and recommendation? Who knew I could simply call the MCO case manager —because she obviously knows so much about AAC and thinks that this is at all similar to this and this. And the whole inability to understand symbols and visual scanning for choices, etc? Obviously not a problem in her mind.

I wonder if she does open heart surgery, too. Or prescribes eyeglasses and seizure meds.

* I also called DynaVox and spoke with a very helpful sales person. When I described where we are in the process of teaching Nik how to communicate, she agreed that the device they have for “emerging communicators” was probably a bit advanced for Nik right now. She did offer to have the regional sales rep come to our home and show us the device so we could be absolutely certain; we may do that just so we have crossed the T’s and dotted the I’s.

Sigh. Another waste of our already limited time…

Stay tuned as the saga continues.

ETA: Thank you for some of the comments specifically about some steps to take. In my haste to post this, I neglected to note that I have spoken with the Executive Director of DATI (which is also the key assistive technology advocacy organization in our state). She has already begun a dialogue with the top people at Medicaid — the ones responsible for selecting the MCO’s and determining policy, etc. They are working to resolve our specific problem as of Friday. In the longer term, they are looking into whether this is a more systemic issue and how to resolve it for all their stakeholders. I suspect it is systemic and needs to be addressed.

We have also been advised that we should not purchase the devices ourselves because that starts us on a slippery slope which may bite us in the rear later. I anticipate that we will go through several iterations of AAC devices for Nik before we are through, so getting this resolved quickly is a top priority.

I’ll keep you all posted on the progress.

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There’s something talkin’ in the wind
Whispering through the trees
That feeling in my bones again
Just puts me right at ease

It takes me back to all the times
I’ ve been here before
But crossroads, old familiar signs
Tell me there’s something more

(A Change In the Air ~ Clint Black)

There does seem to be the scent of change in the air lately. As I wrote in this poem, it feels like spring is finally coming after a long, dark winter. I don’t just mean this particular season; I mean a winter of the spirit, of the soul.

It feels as though we are on the cusp of some big breakthroughs in many areas with Nik. Since we decided to take him out of school this past autumn (you can read the saga here, here, here, here, here, here, here, and here), he’s made such remarkable progress in all the ways which inspire hope and joy in my heart. No, Nik is not yet potty trained or eating by mouth; he still has a way to go in those particular areas. But he has made such great strides in connecting with and integrating his environment, connecting on a deeper, more intimate level with so many people —and differentiating between us all.

The bonds between both Nik and his dad and Nik and me, have become so strong that we are no longer peripheral to his daily activities —no longer merely the people shuttling him back and forth to appointments, changing him, feeding him, picking up after him; we’ve become central figures —the ones he wants to play with, to dine with, to hang out with. The ones he misses when we are gone from his side for more than an hour or two. The joy in his little face when he hears my voice when I come home from the gym. The gleeful way in which he drops everything and races to the gate when Daddy comes home from school or work; the squeals of delight when he sees his coat and knows he is going “Zoom-Zoom” —off on an adventure with one or both of us. The deep, crinkly-eyed laughter we share as he looks into my eyes when I tickle him or dance with him, or teach him how to flip backward off my lap to do a standing somersault.

The connection goes so deep, the current runs so strong and true that it makes me weepy nearly every time; we’ve waited so, so long for this connection. It feels fresh and new and exciting every day.

Nik has come light years in a few short months in the way he communicates and cooperates, as well. Nik has progressed from completely ignoring our requests such as “Hand me the red square” when we are playing with his shape sorter, for example, to not only complying roughly seventy-five percent of the time but to also no longer simply throwing his toy over the gate when he is finished with it. Now, he will bring the toy to the gate and, if one of us is in view, he will babble or make some sort of noise to get our attention and then hand us the toy.

I realized just yesterday, as I watched him try and fail a few times to get one of the pillows from the sofa over the gate, that Nik’s tolerance for frustration is increasing; he’s developing more of a determination to persevere. He still gets upset when certain things don’t cooperate with him, but —by and large— it seems that he makes so many more attempts at things before he falls apart if he cannot do it. He is more easily calmed down in the aftermath, as well.

If I see he’s very frustrated with something, I’ll let him have a bit of a tantrum over it and then I’ll come into the room and simply say, “What is it, buddy? Can you show Mommy what you want?” Usually, he then engages with me to help him problem solve; I am trying very hard to not simply do things for him any more. Nik has more than proven he is perfectly capable of figuring things out, but sometimes he just needs a little reassurance that he can, in fact, do it. Not terribly different from any other four-year old, I imagine?

I am very excited about getting Nik’s communication devices; I haven’t written much about that because I didn’t have any idea how long it would take or what to expect. We are completing the paper work to order the devices recommended during his AAC evaluation at the end of January. In the meantime, though, I just found out today that the local branch of our statewide assistive technology initiative (DATI) has both devices available for us to borrow for up to two weeks at a time. If no one else is waiting for them, we may be able to renew them for an additional two weeks which should nearly cover the processing time for Nik’s own devices. I’ll tell you more about the devices and how we can use them in another post a little later.

In the aftermath of the EEG fiasco earlier this week, our fabulous new neurologist has made arrangements for Nik to have an ambulatory EEG done locally —this coming Wednesday! We are hoping that the results will give us some more information about Nik’s odd, recurring pains. I truly don’t think they are seizures but it will be good to have the results to rule it out.

Dr. G recently increased one of Nik’s seizure meds —and we’re seeing some positive changes, thus far. The increased dose does tend to make Nik a bit drowsier —though you’d be hard pressed to tell during the day! If you didn’t know Nik and watched him play during the day, you’d think he was a fairly energetic boy; I can see that he is a bit less frenetic and is able to focus on one thing at a time for longer periods. He also takes slightly more quiet breaks and will lay down to play with a toy for a few minutes before he jumps back into the fray.

Where I really see a change is that he is napping again —up to two hours at a clip, if I let him! And it doesn’t seem to interfere with his ability to fall asleep at bedtime. Nik is averaging about ten to eleven hours a night; I wish I could say he is consistently sleeping through the night —but I am hopeful that he will again! The best part though is that both Niksdad and I think we are seeing much less seizure activity since the increase. It’s only been four days so far, but it’s a good sign.

And, of course —as you saw earlier this week— the eating is progressing very well. Now, mind you, we’re nowhere near even being able to count the calories in what Nik is eating and even farther away from thinking about losing the feeding tube. But, the progress Nik has made in the last couple of months is unbelievable. It’s as if he is constantly challenging himself to try something new.

The key, I think, has been in recognizing and honoring his need for autonomy; Nik wants to feed himself —which is right in line with his extremely strong spirit of self-determination! It seems that, as long as Nik has his own utensil —and, lately, his own bowl —and can have some measure of control over eating, he is a willing participant. I might even venture to call him a joyful participant. He still struggles with large quantities of more than a half-teaspoon at a time, or with chunks larger than a grain of rice; he hasn’t quite figured out the whole chewing mechanism but we think he is on the way. Where, a year ago Niksdad and I were running on the faintest vapors of hope that Nik would ever eat by mouth again, we are now both excited and enthusiastic. Mealtimes are wonderful family times again.

Many would say that our life goes at an insane pace —and I suppose they would be right. Between Niksdad’s nursing school, nursing clinicals, and work and Nik’s multitude of therapies, playgroup, and swimming —with the very frequent doctors’ appointments thrown in for good measure— and my renewed attempts to get in regular work outs at the gym and maybe even a date with Niksdad every once in a while, I guess it is rather frenetic. But it feels like the pace of a family finally hitting its stride after so many stumbles and false starts; like we’re actually gaining some ground right now.

And that’s a pleasant change, indeed.

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It’s been a super long week…seven appointments in four days, 300 miles on the car (for the appointments), and a very high stress day yesterday which involved a missed workout, mopping the floor twice, wiping down the TV and entertainment center and shampooing the sofa. Oh, and a solo-parent outing with Nik on Thursday night in a non-child-proofed house! In spite of all that, Niksdad and I managed to squeeze in a date Friday night and all three of us had dinner with my parents tonight. I even managed to fit in three workouts this week.

In other areas:

Keep your fingers crossed…I think we’ve debugged the episodic pain thing (no thanks to any doctors though!), or so it seems. Since we increased Nik’s caloric intake and are making sure he gets a snack or something roughly every three hours, Nik’s been sleeping anywhere from ten to twelve hours each night…straight through! And the day time episodes have diminished significantly; we’ve gone from ten plus episodes a day to roughly half a dozen or fewer a week now. I really do think it has something to do with his metabolism or his endocrine system; it wouldn’t surprise me as I have some issues there as well. Still, we are going to go ahead with the video EEG (Feb. 26-28) to make sure it’s not related to any seizure activity. Nik’s seizures are, for the most part, subtle and can be easily missed. Occasionally, like last night, he will simply drop. Fortunately, Niksdad was on hand to catch him so we avoided any bloody lips or nose, thank goodness!

There are times that the pain seems to strike Nik completely out of the blue; he’ll be having lunch or playing happily with a toy and then —all of a sudden he begins to cry and punch himself in the head or poke at his eyes. Those are the ones which cause considerable consternation for us all. But, there are times when Nik uses the same behavior to communicate his anger, frustration, or boredom. Teasing out the difference between the two has been much easier since we made the assumption that any actual discomfort may be caused by hypoglycemia or something in that realm.

Really, though, I’ve got to give Nik credit for his smarts; he’s identified the fastest and most effective way to get Mommy and Daddy to drop everything and come running when he wants us. Since he can’t call out for me, and he can’t tell me what he is feeling —yet—he bangs his head. I don’t like it but it makes sense to me. The next step is to work on finding ways for him to express his frustration without causing himself physical harm. My mother and I are constructing a very large “crash pad” that I want to try to get him to use for those times. We’ll see how that works out. Meanwhile, I need to get things rolling to procure the AT devices which were recommended at Nik’s recent AAC evaluation. If we can get those into use I think we will have a pretty good shot at, eventually, making some headway in minimizing Nik’s acting out of frustration.

I don’t know if Nik is going through some sort of separation anxiety phase right now —or maybe it’s just a control issue; lately he wants me to play with him constantly. He loves to play with his shape sorter —he has three different kinds, two of which he has mastered and the third he is well on his way to mastery. If I sit with him and talk to him while he works —Oh, look it’s a red triangle, Nik. Where does the red triangle go? Can you show Mommy the blue square? —Nik will empty and fill the darned thing a dozen times or more if I let him. But the minute I turn away —even if I get up to blow my nose —Nik gets up from the floor and begins to methodically throw all the pieces over the gate; he never seems upset —in fact, he laughs this giddy little giggle while he is doing it. If I stop him and sit down with him again he will continue to play happily.

The kid is insatiable for the company of Mommy or Daddy. We don’t necessarily have to be doing something directly with him; we just have to be close enough for him to engage us if he wants to. The irony is that when I try to take him to the Y and put him in the Kid Zone (childcare) so he can play with other people, he completely freaks out. Last week he got himself so worked up that he threw up everywhere. I know that if I can spend a few minutes with him and distract him with the toys he will be fine and won’t even miss me.

Yesterday morning was beginning to be a repeat of last week; when I told the attendant that I needed to help Nik transition, I was told emphatically that no adults other than Kid Zone attendants were allowed in. This particular person didn’t know Nik (I don’t usually take him on Saturdays) so they didn’t understand the need. To them, they just saw a small child with a behavior problem; their attitude was pretty much Tough luck, lady! I left angry and frustrated —and had to blow off my workout partner! The people that work there during the week all know Nik and work with me to help him adjust. In fact, when I see these same ladies out in the grocery store they all ask me Where’s Nik? How’s he doing? We haven’t seen him in a while! There’s a relationship which gives us the flexibility and understanding to bend the rules a bit.

Yesterday was my first time encountering a person who either didn’t get it or didn’t care; it was eye opening for me in many ways. I realize there will be many, many people who neither get it nor care and I need to figure out how to handle it in a way that takes care of Nik without alienating others. I know we will encounter it more and more as we venture out into the world beyond the safe and familiar confines of our home.

Today, though, provided a foil for yesterday’s anger, frustration, and disillusionment. Niksdad didn’t have to work so we had a nice little family outing this afternoon —at the Y! We figured it would be a good idea to see how Nik handled being in the pool before we plunk down the fee for the special adapted swim time I wrote about here. It’s been about six months since Nik has been in a pool of any sort so we weren’t quite sure what to expect.

The tears started as soon as we pulled up in the parking lot; seeing Nik’s bottom lip quivering and the tears running down his cheeks nearly undid me. But we took a collective deep breath and forged ahead. Once Nik realized he wasn’t going to the child care area he calmed down —until he got into his suit and entered the pool area. Does the phrase “clinging monkey” give you a clear enough image? As soon as Nik got into the pool with me, the tears and panic set in. I don’t know if it was a sensory issue or just plain old fear; I suspect it was some vestibular insecurity. Whatever the cause, it wasn’t pretty!

I held Nik tight in my arms and sang one of the lullabies from Mary Poppins in his ear. That helped a bit but he was still really clingy; Niksdad and I were both surprised as Nik was once so comfortable in the water. Eventually, we found a distraction in the form of some pop-beads which were floating in the water. Niksdad and I got Nik interested in taking them apart and putting them together again; the whole time I was giving him some deep pressure around his pelvis and making sure he could feel my body under his. About fifteen minutes after we got into the pool, Nik relaxed his grip on me and seemed to settle in. By the time we were done —about thirty minutes later —Nik was only holding onto my index fingers, splashing, kicking, and even dipping his face into the water!

The whole family left the pool in a great mood. You might say we were floating. Not a bad finish for a week that started off feeling like we were drowning!

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Well, in a continuation of Kristen’s reference to a perfect storm, I must say that today’s evaluation was absolutely incredible. I am practically bursting with hope and joy and good feelings. And you know what? It feels good! It must be contagious! I know, I know, it’s the whole karmic cycle, the you-get-back-what-you-put-out-to-the-universe kind of stuff but…REALLY! I am not sure if the car was actually running as we drove home; for all I know we could have been flying I felt that good!

The evaluators really got Nik —and he was gracious enough to let them. In an hour and a half, this team of two people was able to discern more about my child’s personality, his intellect, and his communication abilities than an entire school full of therapists, educators, and psychologists was able to over the course of fifteen months! That said, I must also acknowledge that both Nik’s OT (Miss D) and SLP (Miss M) contributed greatly to the process; Miss M accompanied us this morning and Miss D talked to the staff OT yesterday to provide her input. I also have to take a great deal of credit because I made damned sure that this was not going to be another “wasted opportunity.” I provided tons of information, insights, and feedback. I set up our morning so that Nik had opportunities to settle in a bit. I went in with no specific expectations —willing for once to let the process take us where it would.

And, oh, what a wonderful ride!

In the end, we came away with some concrete recommendations for a couple of basic devices and —even better —how to actually use them. Not just “Push this button to record …” but how to actually implement them as a fundamental part of Nik’s daily routines; we are just beginning the administrative process to actually get them. Perhaps most importantly, I came away with the absolute knowledge —firmly rooted in my gut now, instead of just in my conscious, rational mind —that the decisions Niksdad and I agonized over all those months have paid off. Richly.

What the team saw in Nik this morning would not have been possible even three or four months ago. I cannot fault the school for not wanting to see these things in my son, but I do blame them for their unwillingness to provide the environment he needed to make the gains I always knew were possible; I think they simply didn’t know how and would not admit it.

DL, the assistive technology guru was all that I had heard he was —and more. Or is it less? This very physically imposing man was the gentlest of giants with Nik; after a very momentary meltdown (on Nik’s part, not DL’s) there was an instant connection. DL engaged Nik in a way that simply captivated all of us. Nik gave his attention in brief intervals with an intensity I am seeing more and more lately. It is an awesome thing to witness in my child. I wonder if this is sort of like what Drama Mama was describing in this post today. In any event, DL was masterful in the most understated and reassuring way. Watching him in action with Nik was a gift.

During the course of the evaluation we watched Nik do things he’s never done before. I don’t know if he felt the good vibes and knew it was safe to fully reveal himself but it was remarkable. Sure, he sorted some cups by size and then by color (yay! those sorting and classifying skills are finally kicking in!), but Nik came to me seeking comfort and reassurance —not something he really does even in the throes of his worst episodes —and he accepted it. He complied when the OT asked him to come back to sit down with her. He initiated play with DL and then responded with appropriate frustration when DL wouldn’t let him do something he wanted to do.

DL commented to me, “it’s very obvious Nik fully understands physical cause and effect but he also clearly understands social cause and effect.” I was floored. How could this man be so incredibly insightful about my “challenging child” (what he used to be called by some of the staff at his school)?

And when did my son suddenly catch on to this whole social cause and effect thing? Clearly I wasn’t looking when it happened!

I imagine that — much like life in general —everything is a matter of perspective. DL is trained to see all actions and reactions as communication; in his eyes, Nik was communicating loud and clear. The objective, he says, is to help Nik find ways to organize those communications and to learn that there is a dance of give and take.

This morning’s experience left me with the very good feeling that Nik will not only learn to do this dance but that he will, in time, become the master.

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